Expecting Longer Lives with Greater Risk

Lives With Greater Risk, Reward first generation of people with Down syndrome who will probably outlive their parents.

Thanks largely to medical advances, Jennifer Holden, above, belongs to the first generation of people with Down syndrome who will probably outlive their parents. But as baby boomers age, achieving independence becomes a more urgent goal for young people with the disability.

Like many people her age, Jennifer Holden wants to be on her own. But for the 20-year-old Springfield woman, crossing streets can be frightening. Keeping track of money is difficult. And fending for herself is challenging at times for a person who loves to read but has difficulty with novels above a fifth-grade level.

"A stranger could set a trap on me," she says between bites of a cheeseburger at a Wendy's. "Kidnap me."

Holden belongs to the first generation of people with Down syndrome who will probably outlive their parents. The life expectancy of people with Down syndrome has increased from about 25 years in 1983 to more than 50, thanks largely to medical advances. Although achieving independence has long been the goal for any person with a disability, increased life expectancy has made the goal more urgent now that the baby boomer generation is graying.

"It's a big question we all ask," said Gail Williamson, 55, executive director of the Down Syndrome Association of Los Angeles. Williamson's 29-year-old son, Blair, has Down syndrome and a resume that many actors in Hollywood would envy, including performances on television dramas including "CSI," "Nip/Tuck" and "ER." But he also participates in a supported-living day program and will probably need similar guidance when he is totally on his own, she said.

Estate planning is tricky, as families have to create special trusts to ensure that their children will be provided for without jeopardizing their eligibility for Medicaid and other programs. Openings in group homes and supervisory programs are hard to find. Deciding whether to make a sibling a guardian can be difficult.

"It's a huge problem, and it's not just a problem involving Down syndrome but for all people who have an intellectual disability," said Peter V. Berns, executive director of the Arc of the United States, whose headquarters is in Silver Spring. "There's a serious crisis brewing. There are actually huge waiting lists for services across the United States."

In 2006, 61 percent of people with an intellectual disability were living with their families, and more than 700,000 of them were living with parents or family members who were older than 60, Berns said.

"The reality is that the services are not available to take care of these people in the event that their family member either becomes sick or passes away," Berns said. "In a sense, their very freedom is at stake."

Anita Mahood of Leesburg said she and her husband encountered many difficulties, including waiting lists for group homes and other programs, before finding their 34-year-old son, Bill, a subsidized apartment to share with another man who also has an intellectual disability. Mahood's son is enrolled in Community Systems, a supervisory program whose staff drops by her son's apartment to check on him, and a group called Every Citizen Has Opportunities, which provides job training and placement for people with disabilities.

"This is the first generation of children who will outlive their parents," Mahood said. "That's why we worked so hard to find a solution for Bill."

Mahood, 69, said she and her husband have set up a special-needs trust that will provide support for their son after they die. Although her daughter and son-in-law offered to take Bill in, Mahood said she decided that she did not want them to accept primary responsibility.

"I don't feel it's the right way to go," Mahood said. "Both need to have their own lives. I feel very strongly about that."

The LIFE Program that Holden attends at George Mason University's Helen A. Kellar Center for Human disAbilities is in its sixth year, and it is not cheap. Tuition, which is $16,500 a year for a non-degree program, is about the cost of a GMU degree for out-of-state students.

But it also offers a shot at independence.

"With each stage, as with a non-disabled child, you're giving them a little freedom and watching to see if they can handle it," said Jeanne Holden, Jennifer's mother. She knows that her daughter might not realize her dream of becoming a professional teacher and that she probably will be unable to live by herself without support. But her daughter also surprises.

"More often than not, they rise to the occasion," Jeanne Holden said. "Sometimes you've got to take a deep breath. You take that same deep breath earlier with your other kids. But you have to let them go. If they're going to go as far as they can, you've got to let them try."

Jennifer Holden loves movies and musicals, especially "The Three Musketeers" with Charlie Sheen and "High School Musical." She often goes to the movies with friends. She also has been serving as an assistant religion instructor for young children at her synagogue in Alexandria and this summer worked as an assistant counselor in a Fairfax County recreation program. Last year, she spent a week living in a GMU dorm, preparing microwaved meals and navigating the campus. She loved it.

"Independent living is to live by yourself in dorms without my parents and without my siblings -- by ourselves and without my siblings bothering me sometimes," she says. She adds that she really enjoyed fixing her own meals. "I cooked for myself -- I loved that. Hardest thing to do -- cross a street. That's a big problem. Sometimes I don't like it when there's an accident. I don't like cars" crushed up, she says.

A trip to the Metro and a fast-food restaurant with her class last week illustrates the rewards and possible perils that she faces along the way.

Holden's classes in independent living and community access combined classroom work and a field trip with four instructors, 21 students and three former students who work as interns. The students, who have intellectual disabilities including Down syndrome, autism and traumatic brain injuries,hugged often and exchanged high-fives. Attimes, they had trouble understanding the teacher's explanations, but they kept trying.

Holden, in particular, seemed to be bursting with things to say. Thin, petite and with an obvious sense of poise, she was eager to participate, whether listing her favorite restaurants or doodling hearts and flowers on a piece of paper. When she is excited, her voice zooms upward in pitch like a slide whistle.

Because of her disability, Holden has to work hard at things that are easy for many others. She did not always understand what the instructors or people outside the class were talking about. Making herself understood can be difficult as well because of a speech impediment and sometimes broken syntax.

Her day began in a literature class with a simplified version of Jules Verne's "20,000 Leagues Under the Sea." Then came an independent-living session that included an explanation of how to prepare a tuna sandwich and use the Metro system.

Waiting on campus for the Green 2 shuttle bus that will drop the students off near Fair City Mall in Fairfax, Holden gets caught up in teasing insults that ping-pong between her and the class cutup.

The group of eight students and two instructors disembarks in front of W.T. Woodson High School. At the crosswalk to the mall, there is a momentary scare when three students step into traffic while the light is green. Fortunately, there are no cars on the three-lane street, and the students scamper back onto the curb.

At Wendy's, Holden is first in line. Clutching her pink wallet, she follows the zigzag maze to the counter and waits for the cashier. The cashier looks at Holden, then past her, with a look of expectation that someone else must be doing the ordering.

"Hi. May I have a cheeseburger, please?" Holden says. "Small fries. And small drink."

"Okay," the cashier says. "$3.26."

Holden hands the cashier a $10 bill and two $5s. The cashier takes a $5 bill, returns the other bills without comment and tells Holden that the rest of her change is in the chute attached to the register.

Holden lifts her tray and heads for the condiments, then finds a table with friends. She puts the receipt for her meal into her purse.

"For banking," she says.

While Holden is eating, a white-haired woman stops at the table and tells instructor Megan Kime that a nearby church offers a crafts program for "Down syndrome kids."

"That's not me," Holden interjects. Kime listens politely as the woman speaks. After the woman leaves, Kime turns to Holden.

Very interesting article Robyn. Food for thought! I have always been a bit of a "wait til we get to that stage"person, but you really do have to plan for the future with our kids. Cos so much of the independance skills can be instilled from a young age.

That made me so mad that the cashier at Wendy's thought that someone else would order for Jennifer. How hard is it to show them a little respect.

We have a girl in her 20's with DS working at our gym cafe. Usually she just breaks up the boxes and puts them in the recycling, and stocks the shelves, but she LOVES to serve, and always gives my girls their snakes (very delicately, with tongs). She technically isn't allowed to take the money, because she is not quite at that level, but she has some idea, and I always pay her, and tell her I have given her the right money, or how much change she has to give me (at which point she has always made up the right amount of change for me, even if I have to say "1 20c piece, and 1 10c piece"). The cafe owner is perfectly happy with this arrangement, and it makes Lydia, our friend with DS, very happy indeed. She just grins from ear to ear from the sense of achievement, and the RESPECT. Honestly, how hard is it.

thanks for the article, I like to have a read of how older people with DS do things/manage. Hopefully gives me a realistic picture of what life may be like and what to plan for (where possible). I know some literature mentions to aim high for our kids with DS because if you don't expect things from them that stops them learning as much as they can. I know I am often surprised by things Patrick has done that I did not realise he could. Today the speechy tricked him and showed him a toy dog calling it a cat, I went to correct her when I realised what she was doing, and Patrick straight away signed that it was a dog. I'm so proud of him

keep putting great current articles up, I really enjoy reading them, even when their challenging to my beliefs